Hello Ellen,plus Alice and Wallace

I must admit I am forthright and say it as it is,so what can I say except I am sorry if I offended anyone.

I am a carer and do use the carers section,concerning my own husbands Journey,because I realise that hearing from someone who is on a down wood path,is not good news.
everyone has a point of view and…[Read more]

Hi DXS and lovely David.

I think may be I should have said it’s your right to apply and even appeal a claim.

Except my apologies David. Lol.

This in its self is a difficult subject,on one hand you have all the negative press releases people claiming benefits!!!?, and the other side of the coin many people who need this help who are not…[Read more]

Hi

I do not think the dosage is the same for all patients!!! It is decided on an individual bases,for example my husband had his main chemo at half dose as he had had kidney problems previously,but they had regenerated to a fairly good level.

As for remission, numbers do not mean anything,!!! You have to go into this knowing all the facts and…[Read more]

Hi Maureen

Velcade takes a little time to get going,so try not to worry,light chains,can vary,we no longer go by light chains,as they did not show a true reading after Thalidomide ,they read normal,but BMB showed it had gone up to 80 percent in bones.
I now tend to go on how Slim feels in himself then wait for BMB results,his has gone down to 10…[Read more]

Hi Sharron

When you are ill and trying to come to terms with everything it’s hard to be told,”sorry you have not got Cancer we cannot help you”. Did you laugh or cry?????

I would go to your local CAB,they have experts who will help you fill in the form,get a letter from the hospital for support to your case,jump over the first hurdle,and appeal…[Read more]

Terry

I did say it takes nothing from you!!!,believe it or not we are on the same roller coaster with the same problems,yes we are old age pensions and you are a young man with a family.

You would be very wrong to sign off from here,because we all understand your position.

I am sorry you find my opinions hard,I was just trying to explain it…[Read more]

Hi Everyone

I felt compelled to give my input on this,and I can tell you it is so annoying trying to get on line,!!!!

Terry let me explain,when you reach 65, you are entitled to very little,everything except attendance allowance,is considered by the amount of money in your bank account,money that you have worked and saved for your old…[Read more]

Hi Everyone

Thanks for your best Wishers ,we will make the best of what ever time we have,consultant from Haematology has not been near us,although he was in on Thursday and Friday,his off ice is across the corridor from the ward Slim is in. I was told decisions would be made at a meeting and they would come and see us,I waited all Thursday and…[Read more]

Hi Dusk

Well you have that right sceptical,but that’s my right too,it’s nothing personal!

I am aware it might of happened anyway,but even with a 30 delay,I have had a personal conversation with the doctor who was shocked. I told him I should have had a bet with him,I also consider it’s my fault as I new what it was,instead I said we will soon…[Read more]

Hi Sharon

It does sound like a very rare condition,and you do need to find people who have the same condition,for support and how they cope with it,do ring Ellen if there is some one else with related conditions she might be able to put you in touch with them,plus if you are going to have a SCT you have to the right site for info.
I would also…[Read more]

Hi Jean

Glad to see things have improved,make the most of this period and have a lovely time Eve

Hi S

Light chain deposition disease???

I must say it’s a new one for me,so I can understand why you feel so isolated,seems to be a mixture of Bence a Jones light chains plus amyloids .
I know from my husband his IGg bence jones light chains,show no protein,but it effected his kidneys.with Amyloids there are only 600 cases a year and only…[Read more]

Hi David

Why is attendance allowance not an option??????
My husband gets AA he is 69 had it for three years,it’s not based on how much money you have,it’s your right,day AA is about 38 pounds,full AA is 78 pounds,if you have a carer who does not earn any money you can arrange a carers allowance,I do not get it as I have a pension.

I would…[Read more]

Hi Dick

After 3 years plus on this roller coaster and learning an awful lot on the way,plus hospitals have very different ideas about when treatment should begin plus how test are interpreted !!!
We have come to the conclusion ,when you have your BMB have bloods taken before hand if you need any bloods or platelets have an infusion ,then they can…[Read more]

My husband died in September 2012 aged 57. He had had mm for 4 years but the end came very suddenly. The pain will never go completely lesj, but you learn to cope with it. I miss Stephen all the time, but have learnt how to cope.

Hi

I would agree with Rebecca,I think it is very important to know at least the basics in terms of bloods and results of test,so this has been my job as a carer,but saying that I do not always tell Slim the whole facts unless he ask me.

As time goes on other factors come in to play,that may effect your body,in Slims case it was a blocked artery…[Read more]

Hi Poppy

Fiona is right,take the time now,as time goes on your gran will not be able to enjoy your company.
People choose there own time to die,so no one can give you a time limit.
As long as your gran is comfortable and not in distress or pain,it will not matter if you are on holiday or not.
It’s a sad fact of life that many older people are not…[Read more]

Hi Ali

As Helen says ,it’s good that life has been normal for sometime and the Myeloma locked away!!

They usually pick up the Myeloma in the bloods,so the cat scan could be old damage,did mum have damage in the same area last time!!
If it is a new Plasmacytoma it can be dealt with on Chemo,Slims old damage and new damage showed on a MRI Scan,so…[Read more]

Hi Andy

We have been having whoops!!!!,so I thought I would tell you about it! So you have some idea about Whoops,s!! Lol

As you know Slim was in hospital discharged yesterday at 1 pm, home tired and looking forward to bed!! I was reading his discharge letter,because I had asked early about blood results,only to find his HB read 75,eventually I…[Read more]